Category Archives: parents

I have been blogging for about four years now. In my first year my friend Michelle at Big Blueberry Eyes began hosting the 31 for 21 challenge. Although Boo doesn’t have Down Syndrome she has a lot of friends that do. I have participated for the past three years and will do so again this year. And this year I am starting on time, so bonus points!October is Down Syndrome Awareness Month. Boo’s favorite friend at school, Jillian, has Down Syndrome. Just like Boo, Jillian learned sign-language first. Did you know that most therapies used in treatment for a person with autism or developmental delay were first created to be used for children with Down Syndrome?Sadly more fiction is out there about Down Syndrome than facts. Last summer a man (for lack of a better word) told a woman that it is immoral to have a child with Down Syndrome. He is wrong, so wrong. I am not promoting pro-life or pro-choice, it is your decision. However I urge, no beg you that if you are pregnant and told your baby might have Down Syndrome to find out the facts, find the support and find information before making a choice you cannot take back.Here is what Down Syndrome is not:

Down Syndrome is not contagious

Although all children with Down Syndrome experience some cognitive delay, having Down Syndrome does not mean the child cannot learn

Down Syndrome is not a rare disorder. In fact 1 in about every 700 children are born with Down Syndrome

People with Down Syndrome are not always happy. Just like all children they have their moments

Here is what Down Syndrome is:

People with Down Syndrome have jobs and participate in the Community

People with Down Syndrome have the capacity to love, to learn and to affect change

People with Down Syndrome life expectancy has grown to be that of most peers.

People with Down Syndrome have friends, know love and just like their peers have tempers

According to NDSS, there are more than 400,000 persons with Down Syndrome living in the US. Chances are if you do not know someone today you will tomorrow.

Down Syndrome does not discriminate on race, age or income level

Having Down Syndrome is a life sentence, but it can be a beautiful life.

The purpose of the 31 for 21 challenge is to post every day in October. Each post does not have to be Down Syndrome related. I did focus on that today to kick off the month. Please visit Michelle’s post to learn more about participating.I hope my fellow bloggers join Michelle’s Challenge. Because awareness promotes acceptance.

I read a fantastic post from Eli at Coach Daddy the other day. So wonderful I decided to steal ahem, borrow ahem, use it for inspiration. Lessons he learned from the most valuable source ever: his children. It made me think, as much as I have tried to teach my girls, the lessons I have learned from them are immeasurable.

Lesson 1: Seeing the magic in the world. Abby, at 10, is still enthralled with fairies, sprites, Christmas elves and witches (the good kind). She will spend hours making fairy houses in the backyard. She will stop in wonder to show Boo a pattern on a tree. She will look in puddles and see a rainbow. Where I will charge forth through the woods, Abby takes her time to admire the magic that is a butterfly dancing on the flowers. As a parent you never forget seeing the look of wonder on their face when they meet a Princess.

Lesson 2: Seeing the beauty in the world. All parents have been the recipient of the bouquet of dandelions. I hate yard work. As in despise it and wish I could convince David just to pave the entire yard. Yellow weeds had sprung up in my daisy patch. In the middle of pulling them, Abby stopped me and said: BUT THEY ARE GORGEOUS. So they stayed. Lesson 3: Slowing down. I race every where. I do not casually walk into the grocery store, I speed walk throughout the experience. I find myself doing this at home. Racing up and down the stairs, into the laundry room, doing whatever. One day Boo took my hand and said: SIT ERE. Just that, sit down mom. She sat down next to me and just looked around. Not at anything in particular. Just took a moment to sit. We sat for a few minutes, she said ALL DONE. I have learned to walk at their pace.Lesson 4: How siblings should treat one another. I admit to not being the perfect older sister. Ever. My relationship with my siblings is, well…complicated. When I look at my girls though I see how it should be. That sibling love is unconditional. It is accepting one another as is, no qualifier. That every time you see one another, whether it was five minutes or eight hours ago you greet one another like this…

Lesson 5: How to forgive. It amazes me, how quickly you can get over hurt feelings. If I have snapped at Abby (or her at me). If I mix up the girl’s lunches. If I forget an important event. If I show up at a birthday party a day early, at the wrong house. I am forgiven every evening before it is time for a good night kiss.

What lesson have you learned from your children? Join me in stealing Eli’s prompt.

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. I hope you enjoy the trip back in time.

Originally posted 23-AUG-2013You know how before you give birth some one gave you a What to Expect book? You also probably did a birth class. None of which prepares you for life with an actual child.

Last night Boo woke up at midnight and proceeded to throw up every 15 minutes for the next couple of hours. Then she only woke every 45 minutes to throw up. Eight hours and four loads of laundry husband comes home from his shift. As I lay Boo on the couch to go to work, she throws up one more time….all over me.Second shower and a change of clothes and off I go to my paying job. You know when you get into the office you ask the question, how are you to your coworkers. Not that you actually care after being up all night, but just to be polite.And then that one coworker, the one without children. The one who is unmarried and lives with the dog that is her life. You know the one that I mean. The one that has time to exercise, take long walks, drink her wine without interruption. The one who has the life you used to have before children. Let alone a sick child. She proceeds to tell you that she is ‘exhausted’ but ‘surviving’.And all you want to say is survive this (with the one finger salute) and walk into your office. Instead you empathize and escape to your office as soon as it is polite. You walk into a call from your husband saying Boo has now spiked a temp. What should he do? To another call saying the contract is ready to be picked up and that a hundred emails that tell you other things need to be done before you can escape to take care of the most important part of your life.But you need the paycheck. So you put your big girl panties on and go to work.And think to yourself, I’d really like to meet the author of that book, because they have no freaking idea of what to expect.

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It happens, a lot. A child will see a person/child different from them and in the loudest outdoor voice possible they will ask:“Why is that person black”“Why are those two girls kissing” “Where are his legs”“What is that thing in that boy’s throat”As parents we think we are doing the right thing by saying “don’t look” or distracting the child. But it’s wrong. When you redirect the child, when you do not answer their questions instead of teaching empathy you are teaching them that there is something wrong with the other person.You are teaching them that person is not to be looked at, to be approached and most hurtful to be friends with.A child will befriend anyone. Heck, Abby will befriend a squirrel if they make eye contact. Before Boo I might have been that parent who tried to redirect her attention. My actions could be justified, I might have been hoping to spare the other mother embarrassment.But why should she be embarrassed by her child? Is she not supposed to leave home with her child who happens to be in a wheelchair? Is her child to be locked away like he is something to be ashamed? Should the father of a child who is deaf not use ASL because another person might stare? I thought we moved so far from the time when children were put in sanitariums. Instead parents are made to feel they should not go grocery shopping or to dinner with their child not to spare themselves but to spare others. We begin making our home their institution.I hope you remember my friend Julia from the What’s Your Challenge Series. This past weekend her mom took her grocery shopping. Julia loves being out in the car. She and her mom endured stares while shopping. As Lisa said, “you get used to it”. It was such a beautiful day they decided to stop at Starbucks. A young girl approached Julia, Julia lit up. Her mom, Lisa said hello to the little girl. Then sadly the girl’s caregiver rushed over. Took the girl by the arm and told her to “not to look” at Julia.Like Julia is a freak and should not be looked upon. That is how I am sure her mom felt. I know it is how I would have felt. Instead of enjoying her coffee in the beautiful day, she took her daughter to the car and cried the whole way home.In the interest of fairness I want to give the caregiver the benefit of the doubt. Even professionals that work with people who have special needs wonder if they can do it, can they take on this care. I am sure this woman thought she was sparing Lisa and Julia hurt by any questions the younger girl might ask. She might not understand that Julia understood a potential friend was whisked away. That her mom was made to feel unworthy. That her sister, had she been there, would have asked why the caregiver was so rude.There is the rub. So many of the uninitiated don’t know what to do. Do you let your child approach and ask questions?Here is the answer: YES! A resounding YES!Because here is what makes children awesome: the question they ask might not be the one you would. But they open the door for you to approach the parent. We are approached all the time with Boo. Abby tends to take the questions from the kids. I am consistently amazed at how few questions are asked before acceptance is born. (My favorite answer of Abby’s: Her brain just works differently than yours).Kids just want to ask the questions. It’s the parents who want the details. That is okay too. Ask away. Do it with respect but ask. If you are not comfortable asking, how about just saying hello?You will be teaching your child an important lesson. That we are not all the same but it is our differences that make our community. You can teach your child what empathy and acceptance means without ever having to say a word. Or you can teach them the opposite, it’s your choice.Your actions will show that Julia is not a freak. She is not something to be locked in her parent’s home. Julia is the miracle of her parents. She is the younger sister of K who adores her. She is her daddy’s princess, her mom’s warrior. She adores her two German Shepherds. She loves swimming, horseback riding and driving in the car. Julia has inspired a runner in the I RUN 4 organization. She is the reason why her runner gets up and runs every morning.

You should get to know her and others like her if given the chance. It just might inspire you to teach your child acceptance rather than avoidance. You just must learn something more about yourself.

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I have no interest in being a person who wallows. I do not want to be a blog that focuses on one theme. I think of this blog as my therapy. If I am lucky it is your therapy too because you realize you are not alone.Whether your child is healthy and ornery like Abby or challenging like Boo or your house has a crazy puppy who is equal parts loving and destroying your house. I want all to feel welcome and to feel a connection.Then there are days like today. The day that started out promising, too rainy to run. Waking up early to realize that the morning goes smoothly without incident. You knew it was too good to last.It started innocently enough. With your daughter telling you that her pants had a whole in the, well, crotch yesterday. A boy on the bus noticed and it ended up into a discussion about who had an elephant trunk and who was flat.Yeah. I went there. You tell the boys mom. Because you want to make sure that 1. she knows your child typically does not go into school with a hole in her crotch (unless she is Kristi) and 2. that you made sure there was no inappropriate show & tell on the bus that would get either kid suspended from elementary school. The other mom kind of reacted differently than you, had ‘the talk’ with her child. You felt bad because you saw and admitted to the inappropriate humor to the situation. The fact that Kristi saw the humor and said HEY RIGHT A BLOG POST ABOUT IT made you feel better.You think that is the most you would have to deal with in a day. You think hey I handled this maturely. I answered my daughter’s questions in a way that she understood and didn’t feel embarrassed about. I promised not to tell her dad. Thank GOD he doesn’t read the blog since I never promised her I wouldn’t tell the world. Then the other shoe drops. Boo happens. She has a meltdown at school and at home. Abby tries to compensate by being the good girl. She tries to placate Boo but I stop her because I do not want to reward Boo’s behavior.

I realize that I am wallowing. I am stuck in this mantra that Boo is sucking the life out of us. That as awesome as she is, she is draining. That I suck at this. That I cannot stop wondering where Spring is. When life will get easier.When Boo will not demand so much energy (probably not going to happen). That I will not have to demand a doctor pay attention.That I will not think life would be easier with the Abby issues.I never intended to resent Boo. But sometimes I do. Sometimes I suck at this whole “special” parenting thing.Something else I never expected to do. I never had an interest in being a parent, let alone a parent of a child with challenges. Sometimes it is great. Sometimes it sucks. Most times it is not the life I intended.But it is my life and I am doing the best I can, even when it seems I’m not.

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Is she going to be retarded? I asked the neurologist. Boo was 11 months old. She had two EEG’s and an MRI of her brain. They told us she had a “slow” brain pattern. That her development was delayed. That Boo would possibly need care for the rest of her life. That they don’t use the word retarded any more. They use intellectually delayed.I had moved from wondering if Boo would live past her first week of life to would she be retarded in 11 short months. It took another year for me to evolve from retarded to delayed. To understand and feel that a word is not just a word. That it matters what you call people. Here is why that revolution matters.The Merriam-Webster Dictionary defines retarded as “sometimes offensive: slow or limited in intellectual or emotional development”Why is this “sometimes offensive”? After all the definition simply states that Boo is limited in intellectual or emotional development. That is true. That is not offensive. She is limited. What is also true is she is gaining. Limited does not mean stopped. Here is why the caveat of “sometimes offensive” the dictionary also defines retarded as: stupid, obtuse or ineffective.My daughter is not any of these. She is not slow, anyone who has had to chase her down a hallway in her attempt to escape knows that fact. She is not stupid. The moment you meet her you see the spark in her eyes. Boo is not obtuse. She is sensitive and caring. Boo is not ineffective. The change she has made in my life, her classmates lives and some of yours disproves that definition. Words have power. Would you say nigger or faggot? No. Because you know in uttering those words you are hurting someone. So why is retard exempt? Because it is part of your vernacular, because you have always said it, insert an excuse here.Last year during this campaign people told me that the word isn’t used often anymore. That this is an older terms those of us from the 80’s use. But that is untrue. It was used last Thursday in Abby’s school. The administration used a video depicting dyslexia. Overheard in the assembly of middle schoolers: they are just retarded and dumb. Whispered, of course. They knew the word was wrong. They knew the word was insulting. They used it anyway.

When I asked the neurologist 5 years ago if my daughter would be retarded, I wasn’t being insensitive. I was not being derogatory or insulting Boo. I was uninformed. I was ignorant of the harm and tears this word can cause.Maybe you can use that excuse too. You were uninformed. You didn’t know that a word could hurt. Then you met Boo. Now you are not uniformed. Now you know that a word can cause pain. I ask you, the next time you utter the word retarded picture this face:

And ask, would you say that word in front of her? In front of me? In front of her family? If the answer is no, then you have your answer to the question is the word retard is just a word.When I first put this picture in this post I had the word RETARD stamped over her face. But the image made me gag. I cannot imagine my daughter as a retard (stupid, obtuse, ineffective). I hope the thought of RETARD over her face makes you shudder as well. I took the pledge, will you?

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How to survive life as a parent with special needs. Okay that is a lofty goal! It is hard enough navigating parenting with a child who is typical. Add in a few diagnoses and life can get overwhelming. But here is my go-to list for surviving the life I never expected. 1. Keep your sense of humor. If you have lost your sense of humor because it was drowned by vomit, poop, tantrums or tears Google comedian Steven Wright. How can you not chuckle at thinking: “Is it weird in here or is it just me?” (Steven Wright)

2. Make a daily goal. For me it used to be brushing my teeth at least once a day. Now it is making sure I get to work without evidence of Boo’s breakfast on my shoulder.

3. If you feel all alone in this life as a parent with special needs, you probably are. But it is your job to find support. To scream at the top of your lungs I NEED HELP. If no one hears you, let me know and I will add my voice to yours.

4. Make your child’s teacher/therapist/doctor your friend. Find out about their lives. Interact with those who your child spends most of their time. It will enrich your life in ways you cannot imagine and make issue #3 far less likely to happen.

5. Have a glass of wine. Not the bottle a glass.

6. Allow yourself to cry, laugh, grieve and rejoice all in the same minute. It doesn’t mean you’ve lost your mind but that you may have found it.

7. Find “ME” time. I know, I hardly ever do. But when I can run for just 30 minutes I come back a much nicer wife, mother and person. It doesn’t have to be every day (oh how I wish I could find me time every day) but make time for you.

8. You hopefully have a partner. The child’s mother or father. Guess what, they are your partner in this and they too are parents with special needs. So lean on them. Consult them. Do not do this all on your own and remember that partner is there. Make them take your child to therapy, a doctor’s appointment or do drop-off at school. For too long of a time I tried to be super mom, handling everything for Boo. Once I let David in our lives were much easier. If you don’t have a partner look at rule #3.

9. It’s okay to wear your sweat pants with a hole in the crotch for a few days in a row. Just try to remember to wear underwear so you are not arrested for pulling a Miley Cyrus at school drop-off.

10. Mix-up your friends. Try to anyway. Keep a healthy mix of parents with special needs and those with that normal kid who just talked back to them. It will make you appreciate your own little wonder. It will also help to make sure you feel alone.

11. It’s okay to get pissed off. Seriously pissy at this life you didn’t expect or prepare. And once you think you’ve got it handled someone will take the rug out from under you. Consider yourself warned. It is okay to question yourself, your God and your child’s doctor. It is not okay for any freaking one to tell you that you are not allowed to feel anger, grief or whatever emotion you may be going through.

12. Your house doesn’t have to be Martha Stewart Spotless. I will say the state of our life is directly reflected in the mess state of the kitchen. But I have stopped saying to people, sorry for the mess. Instead I say, This is how it always looks and today is actually better.13. Remember you are more than a parent. You are more than a parent of a child with special needs. You are you and may I say you are doing a fine job of navigating this life the best you can.

Lastly, and this is important: Five years into this life as a parent with special needs I will say this is our life. What we make of it. A glass of wine helps. But what really makes me survive?

The friends who have stood by to hold, comfort and more importantly laugh with me. So find some of those and keep them close. They will help you keep your sense of humor and your sense of self.

Here is the problem with play dates. The kids talk. To one another. They find out how the other child’s mom is so much better than the one they came with.

We were invited to a friends house for brunch last weekend. It was a great time. The food was plentiful, the conversation plentiful and Abby was beyond excited to have a friend her age to play in the snow.It wasn’t until the ride home that I realized the day did not go as smoothly as I thought. Abby: Mom do you know S gets $3 a WEEK.Me: Really, she gets paid to just be a kid?Abby: No she has to do chores but they are super easy.Me: (Silence)Abby: I need an allowance.David: Great, start mowing the lawn.Abby: DAAADDDDDHonestly, the girl should do chores. We tried the chore chart a few years ago. But it always came back to the question: should she get paid for doing things around the house? And what exactly should a 10 year old be responsible for? Damn where is that parenting manual! Chores to me should be more than emptying her backpack. After all, I explained to Abby that I don’t get paid for doing the dishes, so why should she get paid for cleaning her room?Abby: Because S does.Great, peer pressure to do chores. Of course it could be worse, I know. Damn play date is now going to cost me $3 a week.

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I haven’t played with Lizzi in a while. Not that I haven’t been thankful, just been to busy to give Thanks. I am sure I’m not the only one! To suck up show how thankful I am here I am breaking the rules (go figure) and doing 12 things of thankful. One for every month of 2013 I survived.

January, I was thankful for the Liebster award.February, I was thankful for Abby’s sense of humor and honest about who her favorite person is (hint, not me).March, I was thankful for people understanding that the word Retard means something different to me now and joining me in abolishing the word.April made me thankful for Jimmy Buffett as I realize he gives us the soundtrack for a laid back life. The sound track, not the manual.May I was thankful to be able to tell people what drives me crazy. June I was not thankful for yard work but happy to know I am not alone.July I was thankful for all the ways my girls make me smile. August I was thankful for husbands.September I was thankful the girls were back in school. Also that boys are gross. October I was thankful for Boo’s therapists and friends that let me take the easy way out.November I was just thankful for Boo. December I am thankful that I have come a long way since January.

Yesterday was a crap day. For me. Not for Boo though. I wanted to let everyone know that not only did she survive the field trip she enjoyed herself. According to David she not only touched a pumpkin but plucked an apple out of a tree!

I know I wasn’t alone yesterday in my meltdown. Other parents experienced the same emotions I did. They just didn’t spew to the entire world. But I am glad I did. I almost did not post yesterday, fearful that I would offend Boo’s teachers and therapists. Fearful that I would look like an idiot when David took her and Boo did not melt down. Fearful that Boo would melt down and I wouldn’t be there to hold her in my arms.I want to thank each and every one of you though, for supporting my meltdown with texts, e-mails and comments. I cannot tell you what it meant that you understood. Or if you didn’t understand you empathized. A friend put it so well, this was a case of mommy guilt at it’s worse. Something we all go through during this crazy period of our life called parenthood. Since parenthood is going to last for the rest of my life I know that there will be other moments when Mommy Guilt overwhelms me. I always thought Catholic guilt was tough, man I knew nothing before children!!

Including how I never knew that parenting was a team sport. So, thanks to each and every one of you who are on my team.

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(c) Kerri Ames and Undiagnosedbutokay.com (2011 through current date). Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Kerri Ames and/or Undiagnosed but Okay with appropriate and specific direction to the original content.